The Prenatal Testing Sham

On this year’s World Down Syndrome Day, Mark Leach discusses the unacknowledged effects of prenatal testing.

Each year, March 21st is World Down Syndrome Day (WDSD). The date 3/21 was chosen as a representation of the genetic cause of the condition, a triplicate of the 21st chromosome. WDSD seeks to raise awareness of a genetic condition that may very well diminish to the point of disappearing. This is due to the prenatal testing sham.

Since the beginning of the year, headlines have touted advancements in prenatal testing. Laboratories are promising a prenatal diagnostic test for Down syndrome based solely on a blood sample from the expectant mother. This would be an improvement over current diagnostic testing, which involves the insertion of a needle into the womb and a risk of miscarriage. The promised new testing is on the verge of realization as soon as next year.

This new testing is being justified for its ability to provide mothers with information about their pregnancies more safely and earlier than ever. News reports relay how the new testing will save babies, eliminating the risk of miscarriage inherent in current diagnostic testing and promoting healthy births. Once available, it is expected that the testing will have almost universal uptake. Indeed, the test developers are banking on this–literally, in the case of Sequenom, a publicly traded company whose stock price is rebounding after plummeting from earlier, false reports about its testing.

But what is less reported in the coverage on the new testing is its likely impact. Already, existing prenatal testing is followed by high termination rates, exceeding 70 percent in California, and 90 percent in England and Europe. At this high percentage, it is more accurate to call it an “elimination rate.” With each advance in prenatal testing, the next generation of children born with Down syndrome is smaller, so much so that there are close to 50 percent fewer children born with Down syndrome than if all were carried to term.

Some have argued that this impact is modern-day eugenics. Certainly the halving of future generations, with abortions being performed purely because of the genetic makeup of the child, sounds of eugenics. But the test developers, and many others, are quick to point out that the testing itself is purely informative. And many mothers of children with Down syndrome will say the same thing, expressing appreciation for having known their child’s condition prenatally so that they could prepare, on their terms, for how to share the news and for delivering at a hospital with the appropriate neonatal services. Furthermore, professional medical associations, noted bioethicists, and many courts in this nation have found an obligation that prenatal testing be offered, out of respect for the mother’s autonomy and her right to choose whether to continue her pregnancy.

This is the medical, ethical, legal, and industry line: the availability of prenatal testing for Down syndrome is required out of respect for a woman’s right to choose. This, too, is a sham.

Since 2007, the professional recommendation has been for all expectant mothers to be offered prenatal testing for Down syndrome. (emphasis added)

Back when I was having children, I was offered prenatal testing for my second child because my “advanced maternal age” (over 30) doubled the risk of Down syndrome. “Doubled the risk”–that sounded very scary, until I asked and found out that the risk went up from 1% all the way to 2%. At that point, I declined: the test was risky, the chances were small, and I wouldn’t abort anyway. But I wondered, “How many women won’t ask? How many women will just go along with it because their doctor said so?”

By the time I had my fourth child, my doctor had to ask me to sign an official form stating that I had declined testing. He was embarrassed to ask me (since he knew my views), but he needed to have the form in my medical file to prove that he was following the current “standard of care”.

Given that progression, it doesn’t surprise me at all that it has become standard to “offer” it to all women. And I put “offer” in quotes because it will sound like a requirement to many expectant mothers.

Like the previous poster, I too was told by my doctor that I was too set up an appointment for an “amnio” due to being 39 yrs old. I inquired about the risk and was told that there was a very small risk of miscarriage (and he gave me some number I don’t remember, but like 1 in 1,000 or something rare like that).

I asked him what was the benefit of the test and was told that it would alert us of any birth defects and he listed a few. I asked him what would be the benefit of knowing such information, and he looked at me very odd and told me it would allow me to make choices. I asked him what sort of choices. He again looked at me odd and was uncomfortable at that point. He then stated that it would help us prepare for any needs a birth defect could require.

I asked him if the test could show anything that would not show up on a later ultrasound. He stated that everything the test would tell us, we could be alerted to from a later ultrasound. I asked him then what was the purpose of an amnio? He said “well many women want it so that they can make choices that are better made at this stage of a pregnancy.” I told him then that there were no other choices for me, and that the risk an amnio presented to my baby was too high considering that it really offered no benefit and that we would wait for the ultrasound to inform us of any needs the baby may have upon birth.

He was surprised, and repeated the recommendation to have an amnio due to my age and repeated the low risk factor. I told him that he made it clear there was no benefit it could offer that a later ultrasound did not also offer so it would be foolish of me to risk my child’s life no matter how low that risk was, and that there is no way I would have an abortion, even if tests showed the child had no brain.

Looking back I realize that was the moment I garnered my dr.’s respect. I was later told by the nurses that they were very surprised he kept me on for he was ‘passing’ on all his maternity patients to other doctors, as he was focusing on menopausal women.

This was supported by a coworker who also went to him and was ‘passed on’ during her pregnancy. She was very surprised that I chose not to have an amnio, for she told me she was waiting on her tests to see if “it’s a monster or not. Because tho I want a baby, I don’t want it if it’s a monster.” Her statement made my skin crawl.

Except in unusual cases where there is reason to believe the unborn baby may have some sort of condition that can be treated while in the first part of pregnancy (do such cases even exist?), the primary purpose of early pregnancy testing is to allow a woman to choose to destroy her unborn child’s life.

We refused all prenatal testing while pregnant and always will. (We also declined to know the gender until birth). I think one ultrasound halfway through is prudent though. Our culture has adopted a dangerous and deadly attitude about the unborn. Too many expectations placed upon them – to be a certain gender, to have a certain level or presumed health, and if the baby doesn’t measure up, he gets murdered. And if spared from murder, the children are often left with parents who are disappointed – I’ve seen it.

I’ve also seen too many friends go through rounds of prenatal testing – which produced a lot of worry and anxiety in them – and pregnant women to not needed added unnecessary anxiety! Most have had healthy babies, and the issues with the other babies were not detected by the testing anyway, but rather an ultrasound or birth. Two friends were also told they had a severely deformed child – only to give birth to perfectly healthy children.

People with Down Syndrome are an essential part of our society, and they are missing. This blood test is most certainly a sham. I am angry that our children will possibly grow up with out knowing or befriending any handicapped children.